Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a complex disease affecting the brain and immune system. It is characterised by neurological, gastrointestinal and musculoskeletal symptoms, pain and disabling fatigue. It is a chronic disease which can result in major disruption to educational, social, physical and emotional development for many months or years. Onset of the syndrome may be sudden, triggered by infection, or gradual, where diagnosis may be missed and misinterpreted as school phobia, anxiety/depression or lack of motivation. Diagnosis is made by distinct clinical criteria.

Students with ME/CFS often experience physical and mental exhaustion which can be incapacitating. The student may suffer sudden onset of pain and incapacity with even minor mental/physical exertion.

ME/CFS is associated with a wide range of symptoms which vary in severity. Symptoms can vary daily or even hourly and include:

Students with ME/CFS are often very keen to return to school but become easily exhausted. Because children differ so much in the severity and range of their symptoms, it is important to discuss individual cases with parents. By doing so, schools will be able to utilise a student's strengths and be aware of his or her particular situation.

Some students with ME/CFS can appear pale and tried. Others may look quite well which can lead to misinterpretation and further misunderstanding of the student's true disability. As the student's condition can vary from day to day or even hour to hour, close discussions with both parents and student are essential for successful management.

ME/CFS can affect a student's self-esteem, self-image and social development. Many students experience social isolation and exclusion from peer contact because of their illness. It is possible for staff, peers and family to feel frustrated with students with ME/CFS. However, the student does not want to be ill and is equally frustrated and often bewildered. A supportive school community is most important; understanding and flexibility are essential. Counselling may be of benefit.

Coping with Absences from School

Long absences from school are common for students with ME/CFS. The profound and unique cognitive disability of ME/CFS impacts on new learning and memory i.e. education. There can be significant attention and concentration deficits in word finding, transposition, numeracy, visual/spacial perception, imputing, encoding and retrieval of information. These special problems and the individual differences between students with ME/CFS, mean that schools need to consider a range of educational options such as:

time off until the student is well enough to resume normal schooling - education may need to be placed on hold;

flexibility of attendance; that is reduced hours in primary school, reduced subject load in high school;

distance education if the student is too ill to attend school on a regular basis, allowing the student to work at his or her own pace and avoid travel;

combination of distance education and part-time attendance at school.

Practical Help for Students with ME/CFS

Support which accommodates their individual limitations is the essential anchor of good educational management for each student with ME/CFS. It is important to project a supportive, non-judgemental attitude.

Schools can assist students with ME/CFS in the following ways:

clarify essential learning tasks and give clear boundaries about which tasks need not be done;

arrange for missed work, notes, school newsletters and so on, to be made available for easy collection (e.g. a folder in the front office);

tape important lessons;

make educational videos or audiotapes available;

ensure that all staff are aware of student's limitations, particularly in relation to exercise and sport, and the need for rest;